Thursday, January 2, 2014

Reality...

It hit us hard today!

Drew and I met with our beloved doc this afternoon to discuss our reality, Lucy's reality. There is nothing more that we can do for our girl medically, to fix what is causing her pain. Comfort care is really the only option left remaining.

I won't go into any more detail tonight, my head is spinning with too many thoughts and my eyes are really red and swollen from crying.

I will say this...we love so much, which is why we are hurting so much.

To all of the amazing people in our life who love and support us through the good times and the bad, thanks, we could never do this alone!

Sleeping Beauty's preferred position for sleeping, sideways in her crib with her legs propped up and hanging over the side rail. She has figured out how to alleviate the pressure on her bladder. We realize that this looks dangerous, but she is unable to move on her own so she's safe…it's comfort care.

I am praying for her comfort and for healing for your family's broken hearts. Mito is about the most cruel thing I can ever imagine. I am so sorry so many of our families are affected, but most of all, I am so so so sorry for all of this pain and the tough words you heard today. So wish I could kill Mito....someday isn't soon enough.

I am so sorry to hear this! The pain and overwhelming facts. The enormity and unknown and unfairness. My prayers are surrounding your heart. Perhaps the hardest part of love is letting go. You have loved Lucy so thoroughly and given her so much in life! May the grace of God give you the strength and grace and clarity of mind and the knowledge of how to comfort these days! Prayers for all the rest of your family too!!!

Nicole- My heart is so heavy reading this. Comfort care isn't something we expected just yet even though you have been so up front and open about Lucy's current state. We are always praying for her and all the Marletts.

I'm not the best with words of comfort, but we will continue to hold the entire Marlett family up in prayer. Especially for strength for you and Drew for when you have to discuss this with the kids.

Instagram

FOR THE LOVE OF LUCY RESEARCH FUND

In loving memory of Lucy Grace Marlett, the bravest five-year-old girl we know. Please help us to find a cure for Mitochondrial Disease by clicking on the image and donating to the "For the Love of Lucy Research Fund" established by her family and the UMDF. Thank you for your love and support!

ENERGY FOR LIFE WALKATHON

UNITED MITOCHONDRIAL DISEASE FOUNDATION

We are All the Marletts, a family of six trying to live life to its fullest! My husband and I fell in love at a young age and dreamed of being married, having a family, and growing old together… Even though our life is what we hoped it would be, we could never have imagined what GOD had in store for us along the way. Being parents to four remarkable kiddos has proven to be MORE in every way! When our youngest was born, although we didn’t know it right away, we were given the privilege and challenge of raising a “special child”, a medically complex child. Since starting this blog, Lucy has been diagnosed with Mitochondrial Disease, a progressive degenerative disease of energy metabolism. Even though this is a blog about our life as a family, I write often about Lucy’s medical issues. If you care to read about the trials and tribulations of raising four children, the joys and hardships of our family life, the emotional roller coaster ride that raising a medically complex child puts one on, and the love that pours from my heart onto the pages of this blog then…welcome!